#non-24 sleep disorder

[whoselabelisitanyway]

Hello i couldn't help but notice that u offered urself up as a resource for info abt N24 (sorry if i got that wrong, feel free to ignore this.) So as someone who very recently found out abt it and also probably has it, do u have any resources? Links or articles or anything for me to look at? Anything you could/want to share abt it??

Hey! Yes, I'm happy to write about my experience with N24. (It's not fun, but it's reality for many people.) The sad thing is that I don't actually have many online resources as far as articles and such. A quick internet search showed me Non-24-Hour Sleep Wake Disorder: Definition and Causes | Sleep Foundation which seemed to be a good overview (more articles linked at the bottom of the page). It's very clear that there hasn't been enough research done in a practical sense, though. Treatment options are few, and there aren't any that are at all flexible. Which, I'll just say it, sucks.

For me personally, my N24 is pretty severe, with my days lasting about 30 hours or such, so that I'm awake for something like 20 hours at a time. None of the treatment options presented to me (melatonin and/or light therapy) were effective (I have unusual environmental factors against me, though). That doesn't mean you shouldn't try them, IMHO - but I would caution you against accepting whatever sedatives doctors are handing out these days. If that's their initial reaction/treatment advise, ask them if that medication is approved and tested effective for long term usage. (It won't be - if I'm wrong, lmk, because I'd like to be wrong.)

Lastly, I'll tell you a bit about how I got my diagnosis. The biggest factor was a comprehensive sleep diary. Sometimes they'll ask you to do a sleep study as well, to rule out other sleep disorders. A sleep diary is crucial in helping the specialist evaluate the progressive time changes in your sleep patterns. I recommend getting a low-cost sports watch (with a small profile so it's comfortable to sleep in) if you don't already have one. That was a huge help to me when I was documenting my sleep patterns.

I hope that helps! I wish I could give you better news, but I do believe it's preferable to know what you're dealing with than to not - even if it's not something with an easy fix. Let me know if you have any other questions - I am not a sleep doctor or physician, but I can speak to the realities of living with N24. If I can help others at all, I like to. Good luck!

[teleportzz]

pretty unlikely but are there any other autistic people with non-24 sleep-wake disorder out there who experience this odd mix of distress and jubilation when your sleep schedule realigns with polite society? on one hand, i'm happy that i get like a week or so of actually feeling well-rested and awake at school and like i'm part of the world and society around me, but on the other hand, i get kind of used to being awake at 3am when everyone else is asleep and the world is quiet, so i get very distressed and get sensory overload more easily because i'm reliant on being awake in the middle of the night to help me regulate

taking a shot in the dark here, i know, but if anyone else knows what i'm talking about i'd love to connect. maybe people with other circadian rhythm or sleep disorders like insomnia might also relate?

[neopronouns]

flag id: the leftmost quarter of the left flag has 4 stripes, which are golden yellow, sky blue, faded indigo, and dark blue. the second quarter has those stripes shifted down by half a stripe, with a small section of dark blue at the top. the third quarter has them shifted down again, making the top dark blue section a full stripe. the final quarter is shifted down again, with a small section of faded indigo at the top. the right flag is the same, but each shift down is a full stripe length rather than half of one. end id.

banner id: a 1500x150 teal banner with the words ‘please read my dni before interacting’ in large white text in the center. end id.

two versions of a non-24-hour sleep-wake disorder (n24swd/n24) flag for myself!

both flags use yellow and sky blue for being awake and purple and dark blue for being asleep, with both flags shifting those colors 'forward' several times to represent one's circadian rhythm being out of alignment with the typical 24-hour cycle.

tags: @mad-pride | dni link

[abyssbirds]

The fact that most of the tags under n24 have nothing to do with the disorder and that there's only a handful of posts under every single tag for it sure FEELS like ableism even though it might not be. But I have the time to talk about it so I might as well spread visibility.

(Info under read more)

N24, Non-24, or Non-24 Sleep-Wake Disorder, is a circadian rhythm disorder where your body doesn't run on a (roughly) 24-hour cycle like most people/people without the disorder itself. For example, my days run roughly 18-19 hours instead of a typical 16. My sleep gets later and later and later. I've tried melatonin, tried resetting my sleep schedule by staying up for >24 hours until a "normal" time for bed, and tried keeping ambient noise on like music or nature sounds. I've tried blue light filters. My days are just 26-27 hours instead of a normal 24, though every person with N24 is different.

It's primarily diagnosed in Blind patients, since the cause among Blind people with the disorder seems to be that not being able to see the transition from day to night makes their bodies not produce the proper sleep hormones at the right time.

Among sighted people, the cause seems to be unknown (last time I checked; just one person with the disorder should not be your only source of information!) and, since N24 among sighted people is more rare and less lucrative, it's an orphan disorder. There's not much research into how to help us sighted people with N24 because treatment is often pricey or not an actual solution, or it is aimed directly towards helping Blind people with N24.

As far as I know, there's apparently an implantable device in development. The main suggestions I see are training via sun lamps and melatonin or just trying to get on sleeping pills by lying about insomnia. There is a pill that can be taken, but if you live in the US, it is extremely expensive. So, essentially, this orphan disorder is overlooked and misdiagnosed, and those of us with it have to hope that one of the coin-toss methods of treating N24 works.

N24, even on its own, can be a very disabling disorder. You're either too-sleep deprived to do the things during the day you need to or are busy being asleep because the human body needs rest at some point. Socialization gets very difficult when your circadian rhythm is nocturnal for a couple of weeks. It's an isolating experience. It also makes it harder for people to work and make themselves money. I don't even know if N24 is something that can apply to an application for disability, though given it's not well-known, I doubt it is.

I'm not used to making informative posts like this, so I don't know how to end it, but please do some research into N24 on your own time--I am by no means a medical professional and my anecdotal explanation may contain errors. I just want people to know we exist.

[purplesaline]

The time I'm able to go to sleep each night is always different and I never know ahead of time when it will be. If I try to go to bed too early I'll just lay there staring at the back of my eyelids, if I try too late I miss the window and have to wait until the next night to try again.

But how do I know when the window is?

If you haven't already guessed I have ADHD and the important thing to know about ADHD for this post is that brain never shuts up. No matter how tired you are, brain never shuts up and being bored is painful.

But!!! For me at least my capacity to manage all the trains of thought slows down at a specific point of most nights which means that if I time things just right I can occupy that remaining train of thought with some sleepy music or an audiodrama I've already listened to a dozen times, and while it's distracted by that I can sneakily fall asleep!

If I don't distract it then it tries to tell me stories and that attracts the attention of all the other trains that wandered off and then I need to go be creative and there goes my chance to sleep.

So the distraction is very important. And the other trains need to have gone away first because if there's more than one I need to be doing something with my hands and something else with my brain at the same time.

Falling asleep, for most people, is a science. For Me? It's all art and desperate prayers.

[sideblogformentalhealtshit]

i HATE when ppl go all ''its not too late'' ''u can still get better'' ''its not unfixable'' on me when i tell em abt my problems. Like yeah when u come up w a working treatment for my ''no treatment available'' disorder PLEASE LET ME FUCKING KNOW.

The absolute nerve to assume you know more abt my issues than i do, bruh

[depraved-gf]

Do u ever sleep lol

no ♡

[databent]

[pained wailing emoji]

[confinesofmy]

it's so funny how many therapists i went to when i was a kid when where i needed to be!! was in a sleep clinic!! because ofc i was mentally ill, 3/4ths of my life was spent in severe sleep deprivation! but insurance didn't pay for a sleep clinic, it paid for therapy. so. super cool that i wasted all that time i guess. 😑

[jokeofanartist]

I love having a sleep disorder so rare that there are like 10 posts on it and no real fix for it because it usually occurs in blind people :D

[whoselabelisitanyway]

I had plans to go walking with a couple people I have tried to maintain a friendship with since the car accident.

I ended up having to play stupid call back games with the pharmacy and my doctor because medicaid up and decided they wouldn't cover the meds they've been covering for over a year. (Totally blindsided.)

It made me very late. I was disinvited from the walk.

Bonus, pharmacy was out of second option meds. And I blew one of my last doses on this evening thinking I would need to be social and functioning.

I want to cry.

People only see me as the reason I'm late, or can't make an event, or whatever else is in my way. They don't understand what is going on behind the curtain. If I try to explain, I think they believe I'm making excuses. This person didn't even bother responding to my apology text.

I don't want this life. I didn't choose it. I need friends who see how hard I'm trying and not just me "making things hard for everyone else." I mean, I get it. I require a lot of extra effort. I know that - I live with myself every minute of every damn day. Of course I know that.

But I still need people. And love. And acceptance. I don't know how to find any of it.

[teleportzz]

fucking bullshit that i got diagnosed with "sometimes-lives-like-a-vampire" disease and it isn't even fun. it's actually kind of a nightmare

[watermelinoe]

it's strange to think of my sleep-wake disorder as a disability bc i've had it as long as i can remember and i actually love being awake at night, but like, i'm unhireable lol

[fruitwanderer]

The only part of BZITS that doesn't have a sleeping disorder in some way is either Zed or Skizz, but both are on thin ice

[notebeans-galaxy]

holy shit theres few enough posts on tumblr dot com about non-24 that i can look through the non-24 tag and feasibly read every post in one sitting?

edit: it has been 10 minutes i have read all of them. there aren't any more. this is under both #non-24 and #non 24. i have probably talked about non 24 with random people online more times than people have posted about it on this website.

[sanchoyo]

u know what. The sleep thing is legit bothering me (I woke up at 3 AM after Not Enough Sleep so my nerves are Shot) I think I’m gonna keep a sleep tracker to see how much I sleep and when to try and confirm if there’s actually a Problem or What 🥲